encepholapathy: has anyone got, it my... - British Liver Trust

British Liver Trust

36,240 members17,898 posts

encepholapathy

carllovatt profile image
17 Replies

has anyone got, it my mrs. julie has it after living with cirrhosis, a TIPPS and osteoporosis someone else must have these complaints .

please get in touch

Written by
carllovatt profile image
carllovatt
To view profiles and participate in discussions please or .
17 Replies
AyrshireK profile image
AyrshireK

Quite a few folk on here have symptoms of hepatic encephalopathy from the more minor but life affecting symptoms of sleep disruption, memory and concentration difficulties right through to the more major symptoms of personality changes, tremors and even some who have been in comas due to the condition.

Your wife having cirrhosis and sadly having had a TIPSS procedure will be more prone to HE due to the blood being channelled untreated through the liver and toxins building up in the blood stream.

Normally patients with HE are treated with LACTULOSE to remove toxins in stools (and patients should go to the loo 3 - 4 times a day). Together with RIFAXIMIN which is an antibiotic which tackles the toxins it is fairly effective in treating HE symptoms.

Some folks on here have found removing red meat protein from diet improves matters. TIPSS can also be narrowed in some cases but this would be something to run past your wife's consultant.

Katie

carllovatt profile image
carllovatt in reply to AyrshireK

thankyou katie for your prompt reply unfortunately she is 47kg and dehydration and no appetite is a constant problem

AyrshireK profile image
AyrshireK in reply to carllovatt

Is she under a liver consultant? Is she a potential candidate for transplant? She is obviously rather underweight - are they prescribing any dietary supplements or nasal gastric feeding.

My hubby has cirrhosis due to Auto-Immune Hepatitis. He has minor HE symptoms - thankfully has never had ascites so there has never been a need for TIPSS. He was assessed for and listed for transplant in June 2014 but delisted after his blood tests improved and so was deemed 'too well' for transplant. He was only 8 1/2 stone (54kg) at that time and had to go onto a high carb / high protein diet together with supplements and managed to gain weight - taking him out of the malnourished category though he has never had appetite issues.

She sounds rather poorly at present.

Katie

in reply to carllovatt

Ahh ask for advice of a nutritionist I My weight was less I had no liver problems and it's bloody hard to regain it even doing 0 out of 0 other than trying to collect your child from school once I reached a semi normal weight I think the final straw for me was the day I got out of hospital for the N ms that brought this on (I fell over on Holliday I was normal weight ,I don't know how it happened I stood up My ankle just went side ways a Big Crunch (lots of swearing )phoned my parents upstairs all came running down we all knew it was broken the hospital didn't until the last day of the (Holiday)on a zimmer no boot a broken ankle they stuck me on a zimmer because I couldn't already walk straight.It was not a Holliday the phone call from A & E on the way home was the icing minus urge cake from the Holliday from Hell!It was broken not twisted so hopping around in a taxi for a dinner I didn't want to eat washing from a bucket for a week the weight dropped off (I came home )That day in a boot..On crutches that I am back on again...I had anaemia I have never had it before it was and is awful made my hair brittle covers my legs in black bruises I had started by guzzling high protein shakes not awful ensure + they prescribed 6 or more Aymes plus they tasted good far better than any ensure, freshubin that I ever had they came in good flavours and I guzzled them whenever I wanted.Then once I quickly accepted them(I never had before most of them went in the bin)I ate what I wanted when I wanted my metabolism seems to have gone from my usual very slow into major fast(??)But anything that can tempt your wife and won't make her ill go for..Ask GP to prescribe a drink(they cater for any kind of problem ether Orion deficiency or whatever there are lots of different new drinks available I put mine in a normal cup and as soon as I started it got the ball rolling at first I was topping up everyday on food with these even a normal diet now food only what I want and when I want..But I never skip a meal I look forward to them it helps my Mum is a good cook we go out 1x a week a few steps away (no washing up!)My Mum's night off..So go see GP if your wife's home or get Dr's with a bullet up there arse if she's not.Don't by tiny clothes unless cheap comfy(Primarni)Good I stuck to my normalise size it was a good 12 when I went in its not going to ever get there unless I am doing something in Don't know like a marathon a night.I am now approx 8/10 which is cool my BMI has gone from 21 to 15.4 up to 20❤️❤️😊😊🤞🤞May it stay that way...It's my aim and wish for that..I hope you get help for yourself my parents and son have suffered so much watching all this.I have got cross with life the world and anyone going I have cried an ocean.Developed a lot of new swear words (they are less)My son was starting to request info on them And Siri them in foreign languages....So I attempt not to say them other than when I fall over..Drop or loose something so that's about 1000 times a day...😊😊❤️❤️Good luck to you and your wife Carers support Good if your in the UK?

h0b0 profile image
h0b0

My partner has HE quite a few times prior to transplant. Katie yet again has given the best explanation.x

dezzza33 profile image
dezzza33

Hi the condition is not nice ,you are aware but not really in control had it once i was being drained. every 10days as been said toxins build up ,had a tips op took a year to kick in after that no more drains .after 4 years just had a transplant , early days so far so good Dez regards to your wife

carllovatt profile image
carllovatt in reply to dezzza33

thank you dezzza

Rebeccarussell profile image
Rebeccarussell

I have this as well I'm getting more and more confused I'm waiting to go onto the liver transplant list. It's hard living with it and I can't imagism how it is for my husband he's so patient with me but I've been warned it will get worse before I receive my new liver hope it helps u so u know ur not alone xx

Grankids3 profile image
Grankids3

Hi, I have had a liver Tipps around 4yrs ago, I needed it done before I went in for Bowel Cancer Op, was not allowed Chemo, I've got Cirrhosis due to my Diabeties, Nodules + Lesion on liver, being monitored by Edinburgh Royal Liver team, I have enlarged Spleen, which an Aneurysm appeared, got coils put in the Aneurysm 1 yr ago, seems to be behaving itself, I've had HE after Tipps put in, would not like again, I was taken into hospital, but didn't know anything about it, till a week later, I could go on, but think that's enough today, just exhausted, tired of it all, Keep well xx

Rebeccarussell profile image
Rebeccarussell

Does anyone else crave sugary things with there liver condition it's driving me mad xx

carllovatt profile image
carllovatt in reply to Rebeccarussell

sweets and sour sweets are common in my limited experience I expect most liver survivor have a bag nearby

Dldtx profile image
Dldtx

I got it and it does come and go with sleeping and forgetting being hardest for me. I have found your diet is the very most important to maintain. Being a hard headed man from Texas I called "BS" on the red meat causing anything but a smile. I was wrong wrong wrong the brisket I cooked sent me for ride so I became a believer fast. I went to a class by a dietitian and learned I was a idiot right quick. Now it's fruit, fish white meats and no salt & all my meals are on a very small plate, no breads, so you have to find something you can eat to get your daily protein required an balance your meals out throughout the day. It's a different experience daily I can eat basically anything I want only be it a very little bit and it has to have some kind of protein. Also I take laxatives a few times a week an may have a protein drink. All of that has been working for me so far, I totally understand each day is a gift and another challenge with cirrhosis is waiting but it easy to eat right and consistent.

Esmerelda62 profile image
Esmerelda62

I have A non alcohol related liver disease and have Encephalopathy which resulted in an episode of Encephalitis 15 months ago - I never realised that keeping you gut clear by taking aperiants ands a good diet was so important.

I have also been diagnosed with Osteoporotic changes due to Liver disease

I manage these situations by taking regular lactulose to keep bowels clear and pain relief to manage the Osteoporosis along with regular walking and good posture

It works for me and is just my personal coping mechanism but I think information sharing can be useful.

Best wishes to You and Julie

Hi i had serious HE attack 2years ago. Seriously no fun ITU for 5 days in medically induced coma but i made a good recovery

Admin if not allowed delete. But there is a fantastic Facebook group for HE sufferers. It's a closed group so what's said there stays there.x

carllovatt profile image
carllovatt in reply to

There are a few groups out there just type something related

It's just so nice to know im not alone.family mean well but don't understand and won't research anything I say I got.

Yes I don't think I have liver disease(or no body's told me if I do🤣)I have had severe Anorexia mainly in my 20/30 stupidly I thought and announced I "BEAT" it I was in remission with this it came back pronto...It's back in remission 🤞For as long as possible but if I don't have osteoporosis I must be a "walking" (or not!)Miracle!So far I am made of mostly titanium my back and pelvis are (I am fast running out of bones to fracture or re fracture (I would rather not know if I do have anything else)The osteoporosis goes hand in hand with the Anorexia mine has meant in my 20's at least two year + stays in psyche hospitals (mostly a comp who can find a way to loose weight rather than gain it..I was good this a real pro.I am not now I do not ever wish to be this time was a different story(I just wanted desperately to get well for my 8 year old who was terrified where my "boobies" had gone so I admitted myself which was a pointless waste of time they discharged me I ended up thinner than when I went in there was no money other than a two week stay.I had 3.6 stone to gain I hope I am there my GP says I am.And I eat anything (encephalopathy)Is ??Its related to what I had so ??If I had it??No ones told me??

You may also like...

Green Tea liver damage?

Has anyone suffered liver damage which has been attributed to green tea - either in supplement form...

has anyone had a permanent drain fitted for ascetics !

my son has decompenssted cirrhosis and has 3 drains for ascetics usually removing 10 litres. He is...

Cancer... Advice please

The recent CT has shown that my husband has a small cancer on his liver. They are planning a MRI...

Husband having transnasal endoscopy to check for varices

husband has cirrhosis, portal hypertension, mild hepatic encephalopathy and ascites and is having...

Anyone heard from Catfishjumpin recently?

Hi all. Has any one seen any comments from catfish? She has always been so upbeat and positive when...